Friday, September 26, 2014

Are patients powerful or powerless ?

In the past, it was the doctor who had all the power. When the patient was ill, he was scared and helpless. He went to his doctor and trusted that the doctor would use his expert skills and knowledge to help him get better. All the medical knowledge was locked up in medical books and journals, and patients were not able to make well-informed decisions for themselves, because they did not have the information they needed to do so. The relationship was one of unequals, and the doctor was trusted to play a fiduciary role. Doctors were happily perched on their pedestals – and patients derived a lot of comfort from the fact that medical professionals were available to snatch them from the jaws of death.

Things have changed a lot today, thanks to the easy availability of online information written for patients. However, even though the doctor does not have a monopoly anymore on medical knowledge, and the glut of information has created its own set of problems for patients. Patients don’t know which information is reliable and whether they can trust it or not. Many websites say diametrically opposite things, leaving the poor patient even more confused. They don’t know whether they should trust their doctor – or the website. When should they get a second opinion ? Suppose this confuses them even more ? Or should they just leave everything upto the doctor and hope for the best ? Can they be sure their doctor will put their best interests first ?

Individually, patients are often scared and helpless, no matter how well-informed they may be, and how many websites they have researched . They want to find a doctor whom they can trust, because they are often too emotionally upset to be confident that they will be able to make the right decisions for themselves. They are vulnerable and know that they can be exploited by quacks and unethical doctors.

This is why they don’t want to try to second guess their personal doctor or challenge his decisions. They’d rather accept his advise as gospel truth. They are scared that if they refuse to toe his line, he may get upset and fire them or abandon them in their time of need. After all, it’s much easier to take the path of least resistance and leave everything upto an expert. We all want a mother figure who will kiss us and make us well when we are sick, and we’d like our personal doctor to play that role for us.

On the other hand , groups of patients have lots of power ! Together , a community of patients can make or break a doctor’s reputation and his practice . This is why individual patients need to tap into the collective power and wisdom of a patient community , so they can leverage its strength . Thanks to the Internet , it’s become much easier for patients to share their expertise and experience . Empowered patients can get much better medical care if they are part of a group, rather than if they are alone and isolated. There is strength in numbers, and smart patients make use of this.

Patients also need to remember that it’s not a one-way street. Just like they can benefit from the collective wisdom of the patient community, they need to learn to give back, to help others as well, when they get better.

Going forward, this is the most cost effective solution for ensuring that patients have a better experience with the healthcare system. This is a win-win situation for both patients and doctors – and good doctors help to set up these patient communities and guide them, so they become autonomous and independent. They can then refer their new patients to these communities , allowing them to tap into the wisdom of the crowd.

2 comments:

Dear doctor, my ivf with donor eggs failed (I'm 39 yr old) and ended in chemical pregnancy just like what happened with Manju's (myselfishgenes.blogspot.in) surrogate. It's already 2 weeks and I'm experiencing constipation /hard stools since last week. I visited the GP and he has prescribed stool softening pills and asked me to eat papaya. Is constipation normal after a miscarriage?

Can you send me more details about your donor egg IVF cycle ? What was the endometrial thickness ?How many embryos were transferred ?What was the embryo quality ? DO YOU HAVE PHOTOS OF YOUR EMBRYOS ? You can see what embryos should look like at http://www.drmalpani.com/embryos.htm Can you please send me the printed treatment summary from your IVF clinic ?